I’m recently # PD r hand L leg tremors + usual list. Partner is not coping, blaming me for listening to Drs whose pharma drugs have caused PD. So basically it’s self inflicted & all in my head! Concurrent with the PD diagnosis journey we retired and more blame on me for failing to work .
So my PD brain can’t argue or fight back but it is quick to foster self harm thoughts as I’m constantly told how inconvenient me & PD & it’s limitations are to our retirement plans.
I foster her getting out @ mixing in happy places, I do domestic duties all day,
She sees support group participation as an admission of failure…have only just joined my local PD group.
Forgive my whiny whinging wailing.. I just need to be heard & understood
This group, yes you reading this now, has, at times kept me sane, inspired, hopeful, less woeful & afloat! Thanks heaps
P
Mellow…
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MellowYellowcup
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Sorry you are having such a hard time. You should join us on the Zoom calls MBAnderson is so nice to host! Lots of nice people with tons of knowledge. YOU WILL BE WELCOMED.
So... Today is Wednesday, and according to Savvy Time, savvytime.com/converter/utc... , 7 PM Wed CST is 8 AM Thu GMT+8, so I'm thinking 8 AM Friday morning is your meeting start time.
I can tell you that for me, this meeting is going to start in about 31 hours from now.
In a marriage, none of us knows who is going to need care first. That is what we signed up for. Now, you must make yourself the priority. You do need to be heard....the Zoom calls thatBolt_Upright mentioned are terrific. I was recently diagnosed with PD and I wouldn't miss one...they have a positive outlook and focus on what we can do to take care of ourselves. In 2019 I lost my left eye to GCA and have clung to Health Unlocked GCA forum...I wouldn't have made it without them. I feel the same way about my new friends with a PD diagnosis. Please join us!! It would help if you had us, and we need you, too. We will grow on you.💞
I am so sorry to hear this! You are not to be blamed, you are doing your best and you are amazing! One day at a time and remember to pray always. Our relationship with our Maker is the most important of all our relationships! You are loved by Him and so many more.
Parkinson's changes everything, and often it is difficult for a caregiver to get their mind wrapped around what life is like now. And then, in two weeks or a couple months it changes again. I feel I have a 'new' husband frequently, and the adjustment in my head unfortunately seems to lag a bit, although I think I am getting better at not getting mad that I just lost another small piece of my husband to this awful disease. If your spouse is struggling to deal with your Parkinson's at an early stage, she may really struggle to make it through some of the more difficult stages to come. I would gently suggest a truthful talk together with no distractions to discuss the future and options. What really helped both of us was moving into an 'independent living' situation so we both had help. It's a relief to have 90% of cook/shop/clean taken care of for me, and a blessing to have handicapped bathrooms, large hallways and help for my Husband.
Your partner is blaming the victim. Nobody ever knowingly self-induced pd on themselves! And they are extremely selfish and self centered for not only blaming you for ruining your own life but also ruining their life in the process. Bad health crises can happen to anyone at any time, and if there was any love in the relationship, there would be 100% support. Im absolutely disgusted by this and you should be too. Don't accept that behavior. Turn it around by telling them, if you suddenly had a stroke because you don't take impeccable care of yourself then would you want me to blame you for ruining my life and all my fun or would you like me to be supportive and nurturing?
Maybe because the situation is new and it takes time to process and adjust, that would be acceptable for a pass. But as time goes on, I would expect empathy and compassion from them. Non parkies cant initially understand what we're going through or how we feel. It's an adjustment for us as well. In the beginning for me, I tried to describe what I was going through to my wife. The stiffness, the slowness, tremors, non motor symptoms... I had to tell her that if she could experience what it's like to be me for 15 minutes she would crap her pants! Now she is very supportive. And sometimes I have good moments where I guess I appear normal and she forgets that I have this disease, then I'll start moving slow, for example, and she'll say hurry up or get impatient or think I'm just being lazy, and I have to remind her what we're dealing with. I say, I know I must look like im perfectly fine but.... You know, I'll never pound on a restroom door again, never know what someone is going through in there.
I would Ike to recommend a book for you, Nutritional Lithium: A Cinderella Story: The Untold Tale of a Mineral That Transforms Lives and Heals the Brain a.co/d/5cJSyLO
If Low Dose Lithium Orotate does for you what it did for me, you will be armed with a sharp mind which will allow you to argue and fight when it's otherwise too difficult. Believe me, I have been there and it was something that behooved me for years. Read the book and discuss it with your favorite Naturopathic MD.
For better or for worse is part of standard wedding vows, and people need to stick to that part of the deal. I wish you the best of luck and I hope things turn around in your favor.
I am new to this forum, relatively newly (June 28, 2024) diagnosed, and appreciate your post so much - I just this evening had to have my first serious discussion with my spouse about what my diagnosis means. The way I explained it to her was that everything takes a little longer. EVERYTHING. She did not understand what everything meant - so I had to drill down - putting on shoes, tying shoes, buttoning a shirt, making the morning coffee, getting in and out of a car, getting in and out of bed, etc., literally everything!
It is subtle now, she mostly just sees the resting tremor, which really does not have much impact (yet), but I need to start preparing her for what will come later. I am early in the disease process, not even on any medication yet (I am taking part in a couple of observational studies), but I can already tell that my spouse is going to struggle with this. And to be fair to her, her father is about 12 months into an Alzheimer's diagnosis, so she is dealing with a lot.
Nevertheless, I have to take care of myself, and it is fair to expect compassion, understanding, and support from a spouse - if they can't do that, then something is wrong. The shoe could easily be on the other foot, after all - even if it takes a bit longer to put it on! 🙂
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